“Consensus on the Current Management of Endometriosis” (2013), by Neil P. Johnson and Lone Hummelshoj
“Consensus on the Current Management of Endometriosis”, henceforth “Consensus”, was written by the World Endometriosis Society, or WES, president Neil P. Johnson and chief executive Lone Hummelshoj and published in 2013 in Human Reproduction. “Consensus” makes recommendations about managing endometriosis for women and healthcare professionals. Endometriosis is a condition where endometrium, the tissue that usually lines the uterus, grows outside of the uterus and is characterized by painful periods, heavy menstrual bleeding, and infertility. At a consortium held at the WES Montpellier on 8 September 2011 in Montpellier, France, participants from medical organizations and endometriosis support groups formed a consensus regarding the management of endometriosis. The “Consensus” serves as a set of evidence-based recommendations for healthcare professionals and women with endometriosis to guide treatment.
In “Consensus,” Johnson and Hummelshoj outline the methods that the participants of the Consortium used and the conclusions those participants formed. A consensus typically reflects the opinions of various scientists within a particular field during a certain time. To create a consensus opinion about the management of endometriosis, fifty-six representatives from eighteen medical organizations and sixteen endometriosis support groups participated in the consortium and contributed to “Consensus.” The medical organizations in attendance included medical, surgical, and fertility organizations, whereas the sixteen groups were endometriosis support groups. In addition, two pharmaceutical companies interested in treating endometriosis participated at the consortium. Each participant and their respective contributions are described in “Consensus.”
The consortium was arranged by Johnson and Hummelshoj. According to the WES, Hummelshoj is an advocate for the management of endometriosis around the world, and in 2005, she became the chief executive of the WES. Johnson began serving on the board of the WES in 2008. In 2017, Johnson was elected to be the president of the WES.
In the introduction, Johnson and Hummelshoj state that “Consensus” was initially inspired by previous guidelines that had been outlined by organizations like the European Society for Human Reproduction and Embryology headquartered in Grimbergen, Belgium, and the American Society of Reproductive Medicine headquartered in Birmingham, Alabama. However, Johnson and Hummelshoj stated that previous guidelines exhibited uncertainty about how to manage endometriosis. The authors state that they attempted to develop a better understanding of the management of endometriosis by including participants from medical and non-medical organizations in the consortium.
The three main parts of “Consensus,” are titled “Methods,” “Results,” and “Discussion.” The “Methods” section outlines the methodology the consortium used to develop statements regarding the management of endometriosis. Then, the “Results” section expands upon the work completed by the participants as it relates to the management of endometriosis. Lastly, in the “Discussion” section, Johnson and Hummelshoj comment on the importance of the work completed by the participants.
In the “Methods” section of the “Consensus,” Johnson and Hummelshoj recount the methods they used to develop consensus regarding the management of endometriosis. First, the authors state that fifty-six national and international organizations were invited to the consortium, and thirty-four organizations accepted the invitation. The thirty-four organizations were comprised of eighteen medical and sixteen endometriosis support groups. Additionally, two pharmaceutical companies interested in treating endometriosis participated. Fifty-six participants were sent to the consortium to represent the organizations and pharmaceutical companies. Prior to the consortium, each participant was involved in a four-month long e-mail discussion and one teleconference to discuss and define topics related to endometriosis, which the authors further define in the “Results” section. The participants delegated presenters to conduct a literature review for each topic. At the consortium, the presenters prepared statements related to each topic based on their respective literature reviews and presented those statements in roundtable discussions about each topic. Sixty-nine final statements were made. Then, the participants discussed and modified each statement.
Following the discussion of each statement, participants graded each statement as strong or weak depending on the relevance of the topic to the treatment of endometriosis. Johnson and Hummelshoj define a strong statement as one where the burden of endometriosis was high and the impact and invasiveness of treatment was low. Conversely, the authors define a weak statement as one that lacks adequate evidence supporting the statement’s treatment for endometriosis. Further, the participants assigned each statement one of four consensus grades which were based on the level of agreement about the statement. The consensus grades include alpha, which indicates unanimous agreement, beta, which indicates unanimous agreement with caveat, gamma, which indicates majority agreement, or delta, which indicates no agreement. Then, the participants compiled the statements and their respective consensus grades with evidence for each statement in an evidence table, which appears as Table II of “Consensus.” Prior to finalization of “Consensus,” the participants of the consortium edited and provided feedback through three rounds of modification, which included roundtable discussions of each topic.
The “Results” section of the “Consensus” has eighteen subsections which further expand upon each statement. First, the authors summarize statements that the participants made about managing endometriosis. For example, the participants talked about managing endometriosis in low-resource settings, and the participants unanimously agreed that the management of endometriosis ought to be included in women’s basic healthcare around the world. Specifically, the participants stated that the management of endometriosis should include family planning resources such as education and contraceptives in low-resource settings. Also, the participants determined that women with endometriosis require individualized care, which should include a network of skilled healthcare providers. Additionally, the participants agreed that endometriosis organizations and support groups can further help women understand and cope with endometriosis.
Next, the authors detail statements that the participants made about endometriosis as it relates to adolescence, cancer, and menopause. Concerning adolescents, the participants unanimously agreed that endometriosis should be considered in patients with suggestive symptoms of the condition. Also, the participants unanimously agreed that sufficient evidence did not exist to suggest that endometriosis increases a woman’s risk of developing further complications. However, the participants did not reach consensus about whether or not hormone therapy is an optimal treatment for menopausal women who experience recurring symptoms of endometriosis.
Next, the authors summarize statements that the participants made about treatments for women with endometriosis. The participants did not reach consensus regarding lifestyle and dietary interventions, such as exercise and vitamins, as treatments for endometriosis. However, a majority of participants agreed that medical treatments utilizing non-steroidal anti-inflammatory drugs such as ibuprofen and progestins such as hormonal birth control should be affordable and accessible for women with endometriosis. Also, the participants unanimously agreed that the removal of endometriotic lesions through laparoscopic surgery is the optimal treatment for the management of painful symptoms associated with endometriosis. In laparoscopic surgery, surgeons insert a small camera called a laparoscope into an abdominal incision to aid diagnosis or intervention. Participants defined the statements regarding emerging medical therapies for women with endometriosis as weak because, according to “Consensus,” the efficacy of such medical therapies lacked adequate evidence. For instance, the participants rated statements categorized as complementary therapies, which included acupuncture and vitamin supplements, as weak statements because a majority of the participants agreed that those therapies lacked adequate evidence as treatments for endometriosis.
Lastly, “Consensus” summarizes statements that the participants made regarding treatments for infertility in women with endometriosis. A majority of participants agreed that removing endometriotic lesions with laparoscopic surgery improves fertility in women with endometriosis. The participants unanimously agreed that emerging therapies for infertility in women with endometriosis may improve fertility, although participants stated that research which proved the efficacy of those therapies was lacking.
In the “Discussion” section of the “Consensus”, Johnson and Hummelshoj describe the results, the importance of the work completed by the participants, and persisting challenges regarding the management of endometriosis. First, the authors state that participants did not reach complete agreement on any of the statements, but that only two of the statements had not reached a majority consensus. Further, Johnson and Hummelshoj state that “Consensus” is the first international consensus regarding the management of endometriosis as the statements were made by participants from different medical organizations around the world. Also, the authors demonstrate that the participation of endometriosis support groups allowed women directly affected by endometriosis to contribute to “Consensus.” According to Johnson and Hummelshoj, participation from those organizations allowed “Consensus” to identify strong statements regarding the management of endometriosis, endometriosis as it relates to adolescence, cancer, and menopause, and treatments for women with endometriosis and infertility in women with endometriosis. However, the authors state that “Consensus” should be updated as challenges related to the management of endometriosis are addressed through new treatments. For instance, in low-resource settings around the world, management of endometriosis is not included in women’s basic healthcare. The participants suggested that family planning resources such as education and contraceptives in low-resource settings may improve the management of endometriosis around the world, and that scientists need to conduct further research to determine the effectiveness of such resources.
“Consensus” has been cited in several scientific articles about treating endometriosis. On 30 April 2014, the Twelfth World Congress on Endometriosis was held in São Paolo, Brazil, and at the event, Johnson and Hummelshoj arranged a similar consensus-building meeting regarding the classification of endometriosis with an emphasis on the views of women directly affected by the condition. In accordance with the 2011 consensus, Johnson and Hummelshoj stated that the goal of the 2014 consensus was to improve the quality of life for women with endometriosis. As of 2018, Johnson and Hummelshoj continue to work with the WES to raise awareness of endometriosis. Johnson has cited the importance of evidence-based recommendations, such as the statements that appear in “Consensus,” as the key to managing endometriosis.
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- Johnson, Neil P. and Hummelshoj, Lone. “Consensus on the Current Management of Endometriosis.” Human Reproduction 28 (2013): 1552–68.
- Johnson, Neil P. and Hummelshoj, Lone. “World Endometriosis Society Consensus on the Classification of Endometriosis.” Human Reproduction 32 (2017): 315–24.
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- World Endometriosis Society. “Neil Johnson.” World Endometriosis Society. http://endometriosis.ca/about/board/neil-johnson/ (Accessed July 16, 2018).
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